INDIVIDUAL WITH LGMD: Mary

04/08/2016 – LGMD “Spotlight Interview”

姓名:  Mary   年龄: 46LGMD2A - Mary BG

国家:美国

LGMD 子类型: LGMD2A / Calpainopathy

 

您在几岁时被确诊:

I was diagnosed with LGMD when I was 25 years old.

您最初的症状是什么?:

My first symptoms were being unable to rise from a seated position without placing weight on my arms for support and difficulty in climbing stairs.

您是否有其他家庭成员患有 LGMD:

No, I am the only family member to ever be diagnosed with LGMD.

您认为 LGMD 患者在生活中面临的最大挑战是什么?:

The greatest challenges for me are trying to remain independent with daily activities.  The disease progression is slow but not being able to do what you once were able to do is hard to adjust to.

您最大的成就是什么?:

My greatest accomplishment was marrying my husband. I became a widow in 2014.  He was one of my greatest supporters.  He inspired me to be the best person I could be.  My family and friends are encouraging and a great support.

LGMD 是如何影响您成为今天的自己的?

I take nothing for granted.  Each day is a gift – some better than others.  I became more outgoing once my mobility became limited as I still want to experience and be active in life despite my diagnosis.

您希望世界了解 LGMD 的哪些方面?:

LGMD is a muscle wasting disease.

Help those you can, become educated and treat everyone respectfully.

如果您的 LGMD 明天就能 "治愈",您首先想做的是什么?:

If a cure was found tomorrow, I would run, dance and jump!  All the things that I can no longer physically do would be top priorities!

 

如需阅读更多 "LGMD 焦点访谈",或自愿参加即将举行的访谈,请访问我们的网站: https://www.lgmd-info.org/spotlight-interviews。